His Hands and Feet, but What if We Can’t Go There?

Sarah Steele (1984-2017) with her father Rick Steele at an SPU event in 2007

My mentor Dr. Rick Steele at SPU, is a professor of moral and historical theology. For several years he acted as my second father until we outgrew the relationship, but I still write him once a month to let him know what is new. He’s a great guy. He was able to be such a wonderful father figure to me because he was such a wonderful father to his first child, his daughter Sarah Lynn Steele, who loved to sing and work with handicrafts and who collected keychains from around the world, which friends would give to her after they returned from abroad. I have one of them from her funeral in 2017 on the hutch in my entryway. I think of her often with love. Rick and his wife Marilyn have two other wonderful children, Mollie and Jonathan, but I don’t know much about them. This post is about Sarah.

Sarah was diagnosed very young with a progressive musculoskeletal disease that locked her arms at the age of 5 (as seen above in the picture) and restricted her lung capacity. Her Christian witness inspires me as a person with a disability and I wanted to share about her with the class. The daughter of professor of theology father and an ordained minister mother, she excelled at languages and was able to read both Hebrew and Greek and studied the Bible in the original languages. She participated in her church choir and was driven weekly by friends to be able make rehearsal. Sarah excelled at putting people at ease and was a bright spot in the lives of many, and even though I never met her, her Christian witness as a woman with a genetic disorder, inspired my own witness as a woman with a serious mental health condition, which at several points of my life, was perhaps just as debilitating and threatening to my own life as her condition was to hers.  

When I think about community as a person with a disability, I am both challenged and inspired. I am challenged when I think of community in terms of what most people imagine with the word community, namely a packed church room or seminary classroom, long-term friendships and fellowships with relaxed boundaries, consistency, trust. All of these are the hallmarks of Christian discipleship, and mission grows out of them. Most of the time. But it is also important to remember that even those of us who cannot do this are still made in God’s image and that we can be missionaries through our witnessing of Christ’s love in the midst of disability and stigmatization. Professors like Dr. Steele remind students like me of this fact, and my prayer is that people embarking on Christian missions would develop an inclusive ministry as they envision what being Christ’s hands and feet really entails.

If missions is more than a given committee that meets on a certain night of the week, if missions is more than a budget, but rather, as our recent church scholarship tells us, is a hermeneutic by which we should measure all aspects of scripture and the life of the faith community, then we would do well to remember that as “sent” people, some are sent by staying healthy and witnessing from where we are located. Particularly those of us who aren’t fully mobile, either due to mental, emotional, spiritual or physical challenges.

When we think of missions, we often think of movement. My church’s mission team is #GoSendGive. But really, missions is the posture of the heart that makes an impact on the church, her witness, and her ability to bring about the coming kingdom. And missions is also about being Christ where Christ wouldn’t be otherwise, which can be with the differently abled. As Christians, we are to be a living sacrifice.

Sarah is the best missionary I have ever known. I will never forget her, and her organization for people with her disability spans the globe and she was connected to many with her disease, as well as with the able bodied. Maintaining connection with the world in the midst of hardship such as what Sarah faced or what I faced before finding the right medicine, is missionary work. Mission work with a disability is the embodiment of the most sacred theology I know. God’s love shines still more brightly and noticeably when it comes out of darkness that cannot fully be conquered in this life, but that has not kept our light from shining.

Sarah Lynn Steele was born on December 23, 1984 in Milwaukee, Wisconsin. She died on November 14, 2017 in Seattle. She was a graduate of Lake Washington High School (2003) and Seattle Pacific University (2007), and an active member of the Lake Washington United Methodist Church in Kirkland. She was born with a rare musculoskeletal disease, fibrodysplasia ossificans progressiva (FOP), and over the course of her life suffered from other illnesses as well. Toxic shock syndrome and respiratory failure claimed her life. She was the beneficiary of extraordinary medical care throughout her life, and her family wishes to express both gratitude for her many caregivers and outrage at a national healthcare system that denies to so many the care that Sarah enjoyed. Despite her sufferings and limitations, Sarah’s joy in life and optimistic outlook were undimmed. She was an active member of the International FOP Association and had friends all over the world. She had a lovely voice, a sweet smile and a radiant, outgoing personality. She loved to sing, and was a member of the LWHS Concert Choir, the SPU Women’s Choir, and the LWUMC Chancel Choir. She also loved movies, theater productions, detective novels, shopping, handcrafts, keychain collecting and chocolate. And she herself was loved by all who knew her. Sarah is survived by her parents, Richard Steele and Marilyn Hair; her siblings, Jonathan and Mollie; aunts Nancy Hair, Sally Hair (Brian Reid) and Carolyn (Rob) Thomas; and several cousins.

Our Political Sagas

Last week I had a full blown panic attack and spiraled downward for three days until Mr. Trump was diagnosed with COVID and stopped tweeting white supremacy. Then I could gain my sanity. My discovery as a result is this: we should definitely unplug from news sometimes. Maybe just read the headlines without the detailed articles. The articles themselves are biased based on the slant of the newspaper and which articles you decide to read is always also going to be a reflection of your inclinations.

Don’t be afraid to just create some peace around yourself. There is just too much trauma learning about national events and international disasters that are out of our hands. We can do nothing about them. And so lets focus on our sphere of influence, our locus of control, and forget about certain twitter accounts (which have been blessedly silent) even when they reactivate when health has been restored. Our political sagas are sagas indeed, but we don’t have to read them so attentively, especially since so much is out of our hands.

Alcohol

I am worried that a lot of people are self-medicating with alcohol right now. I know that I personally have always avoided drinking a lot – it is rare for me to have even a full glass of wine. This is because I know I have an addictive personality. But for people who don’t know this about themselves and yet who have a history of addiction in their family, it is surely a bad sign that my Facebook feed is filled with teachers joking about how people should drop off wine on their porches so that they can better cope with the realities of teaching online and trying to make it work for their students. Be careful, folks. Addiction will sneak up on you. Especially if it runs in your family.

A Relief: the Decline of American Exceptionalism

Ten years ago at this time I was living in Russia, the result of my having won a Fulbright to study in Moscow and learn about Russian culture and perfect my language capabilities since I was teaching Russian at UC Davis. It was relaxing in Russia. The plants seemed softer, the light more vibrant and yet also gentler, and the people more independent, as though they didn’t have to live up to impossible standards. When people worked hard to do well, you could tell it was from personal and cultural pride, but it wasn’t out of arrogance. There was a cultural humility that was so unusual for me to experience as an American. It wasn’t poverty that I was experiencing at all, though other parts of Russia featured poverty and desperation. It was purpose and humility, infused with dignity. I think it came from the general hardship of living and making a living in the country.

For the past month or so, as Covid has spread across the US and our racial traumas have taken center stage; and as our health care injustice and inequity has grown more and more obvious to those of us who usually forget about such matters, – I have had the emotional experience of rediscovering Russia. But this time in the United States. We are not the amazing country that we portray. Sure, there are some aspects that are exceptional, but there is a lot that is not. And as our country groans, I find myself being able to breathe more freely, because there is no longer an impossible standard to live up to paired with the sense that I’m failing by having a disability.

Disability is more obvious in a country that idealizes individualism and exceptionalism, which is what the United States does. And it is a more painful burden as a result. But with the widespread health problems in our country, and with our struggle to educate our children right now, and with the exhaustion and teachers’ burnout, I kind of feel like society is grinding to the halt that I was experiencing when I was struggling and everyone else was “flourishing” (read: when the White upper and middle classes were not threatened with death and pain; BIPOC were, as a group, suffering greatly, and I don’t relish that now, they are suffering even worse).

It doesn’t mean I’m glad that fellow white people are struggling along with the rest of the US right now. Far from it. But I am glad that people are seeming softer, gentler, and that they are giving each other more grace. People seem less uptight even though they are more stressed, and I think that this comes from the fact that we all have a good excuse for failing at perfection right now.

The sad part is that it is a difficult time for mental health. I am very glad that I have discovered the right medicine and treatment before Covid hit. I continue to take my medicine dutifully and I exercise and have started a yoga practice. It is a time, however, for me to catch up with the art of living rather than to feel like I’m behind. It is a time to breathe. I am relieved that I am normal when I suffer. I am relieved to be reminded that suffering is human. And I am relieved to create culture and space for wholeness as a writer, thinker and speaker in a country that can no longer pretend that it is invincible. The next step is that we stop punishing the vulnerable for the vulnerability that we have thrust on them.

Re-learning Tact

I can remember when I first began slipping how what I would say would still be politely framed, but it would be said at an inopportune time and would be repeated unnecessarily. My mind was literally coming undone. I became dependent upon whether people responded or not to my emails and read into it unnecessarily if there was a delay of more than a couple of hours. And this was in 2013 – before email was at everyone’s fingertips.

Well, since 2015, thanks to medicine and lifestyle changes, with every month I get better about not caring about these kinds of things. Indeed, the effects of my medicine strengthened me to the point where I can be measured and thoughtful again. It really wouldn’t be possible for me without medicine. Of this I am certain. And using of the 17hats software that I wrote about in a different post helps daily tasks become even more effortless.

Imagine my joy this morning at discovering that LinkedIn (this post is not sponsored) has a new soft skills curriculum that is meant for people to become more proficient in interpersonal interaction. For people who are like me but are earlier on in their recovery (for me I was doing poorly 5 years ago – and if I’m honest I still have off weeks), I ask you to consider taking this free online class to relearn crucial interpersonal skills and fluencies that fade in the face of serious mental illness. We can learn again, and thanks to LinkedIn’s program, it can be free.

For a long time I identified strongly with the poor communication skills that my illness bequeathed upon me. I could put on a brave face and act “normal” if it was absolutely necessary. But it was soul killing to do it because it wasn’t really me. I remembered how to smile at the right time or how to answer the phone politely and efficiently, but it was no longer what I wanted to do. I was no longer the tactful twenty year old before serious mental illness. I was the deep depressed artist now in her 30’s. A voluminous writer and a world-weary philosopher.

But I am well enough now that I can say, no longer. I am ready to enter the world again and to facilitate wellness and contribution in others as well.

I plan to brush up even more in the weeks ahead with this program. Maybe you’ll join me.

https://www.linkedin.com/learning/paths/master-in-demand-professional-soft-skills?trk=li-jobsindemand-softskills-en&src=direct%2Fnone&veh=direct%2Fnone%7Cdirect%2Fnone

Acceptance? Or Aspiring to Wellness?

There’s a dialectic between acceptance of my illness and my aspiration to wellness that frequents mental health memoirs and I’m wondering today when it was that I realized that sometimes wellness is acceptance. I feel like my mental illness is like a bicycle that was chained to a tree and the tree grew over it, encompassing most of it. I have absorbed it and yet I still thrive. Yes, the wound still weeps here and there, but then the bark extends and I am stronger for it.

The Future: Beethoven and Unpretentious Realness

“I am working out something big for my future.”

As long as I have lived I have had this feeling of growth and expansiveness and that I’m becoming what I was meant to be.

Perhaps it’s hypomania – but on my medicine I can trust that I’m safe from it unraveling into mania and it is enjoyable. And therefore I can embrace unpretentious realness that comes from a joy and sense of purpose even as I fail by normal standards.

As I write I listen to Phillip Glass, and he propels me further along the writing trail with his hypnotic and repetitive lyricism. Aching violins now frantic, now swaying. Piano. The Hours. Film Score. Never seen the film, but given the music I’d probably like it. A lot.

But I digress, because my favorite composer is actually not Phillip Glass, but rather Beethoven. Beethoven. What do I love about him? Everything about him is inspiring and heartbreaking – and yet uplifting because he articulated everything so perfectly in art.

The way he lived, the way he wrote, the fact that he never gave up even with a disability that directly impacted his art. Amazing.

I think I am like that in my own small way and that many with mental illness who find the right treatment are – we never give up even with a disability that directly impacts the art of living. If you haven’t found the right treatment don’t give up.

No, I am not actually deaf, as Beethoven was a profound compositional genius who was progressively more deaf as he aged.

And, no, I’m not a genius.

But perhaps I am more than a little tone deaf to how I come across.

I wrote a recent blog post for a different blog I run (seahurstlearns.com) on antiracism and health and wellness in education that gave an example of how my passion for social justice was something that was influenced by my disability.

My art is getting people to think and to love deeply. To be what I call integrous. Which is integrity that is so integrated that it has become integrous and is a profound manifestation of being. A reified noun.

I am figuring out how to be integrous in my relationships and this has meant that I have had to cut ties with some people. Or not to reach out when they have cut ties with me.

Right now my relationships are like billiards and I am like the cue ball scattering people and yet with a gravitational pull that keeps bringing the ones who need me right now back to me. I’m not good at pool, so I’m not pretending to be a mastermind. There is no logic to my striving – just prayer and following an indelible call to write.

God holds the cue – or is it illness? We will never know in the case of life and inspiration.

What is being given the intangible reality of mental illness? What is being with a person with mental illness?

I think it can be being with and also being with, while separate.

If you know someone with a mental illness who is draining you, don’t be afraid to rearrange the boundaries or to take a break. Mental illness is different than physical illness and we can be taxing.

What about bonding rather than rupturing? I ask myself.

Well, bonds can be stronger and more integrous after a rupture.

While my last blog post in this blog, erinmichaelgrimm.com, described how I have become more relational since reading about polyvagal therapy, I have since discovered that there is more to the story: I have realized I cannot read myself into normalcy though I can become kinder by reading to understand “normal” people. Being normal doesn’t feel real to me and the prospect of living a normal life makes me feel trapped.

I am called to unpretentious realness. I think mental illnesses that are not depression can still cause depression. This comes from when we try to be normal when, frankly, we aren’t. We weren’t built that way.

And that’s okay.

Be Kind, Especially Now. But How?

As a person who is neuroatypical, people are often surprised by what ends up having hurt me, and also by how I bounce back quickly after setbacks that others might never recover from. The problem with this is that it has had the following unexpected side effect: I can really hurt people’s feelings, and since what I have said wouldn’t have hurt me, I really struggle to realize that it hurt as bad as it did.

A friend of mine has a son who has mental illness and she told me about polyvagal theory. It is a complex theory and I really don’t have the credentials to write about it. But it got me to return to the book, In an Unspoken Voice: How the Body Releases Trauma and Restores Goodness, by Peter A. Levine, PhD.. This book I had abandoned as a bunch of baloney. It didn’t resonate. But since my friend said it resonated for her, I thought I would see what made her tick and would read it.

Honestly, reading this book has rehumanized me. It has given me a model for understanding how I should act in delicate situations, and has given me compassion for people who may have been hurt by my words in the past. (I’m never physically abusive or violent, ever; and never have been.) I find myself asking people for their feedback, and also find myself asking, “What do you think?” and, for once, I am ready to take in people’s answers and pivot accordingly. I am more flexible.

Learning about how “normal” people function helped me to see how they need to be treated, and I think that I am a better person for it. I recommend reading books written about therapy for “normal” people. The techniques may not apply to how you would be helped, but they will build your compassion muscle so you can live life more fully and without causing needless harm. It is important, especially now.

Exhaustion and COVID-19: Carrying on Anyway

Having a mental illness is already isolating, and so in many ways I am more prepared for the COVID-19 social distancing practices that are being implemented around the world. Somehow the community that has always surrounded me, feels more real and accessible. For once, there is a sense of us all being in this together, while usually with mental illness I feel like I’m alone and will therefore support people who actually are able to be integrated into the day to day living of life in the 21st century. From the sidelines. My role is still important, but, as I mentioned in a recent post, it is okay not to be consistent in it.

One thing that does not lend itself well to my mental health condition is the sense that I have no choice but to stay home now that COVID-19 is on the loose. Usually I go to the library or tutor a student.

Usually I’m happy to stay home and it feels special.

But now I feel trapped.

Furthermore, I like to substitute teach, – and now I cannot do this. All of the schools are cancelled.

This means that my sense of purpose is not as strong as it usually is. Luckily, I can rely on my CRM processor to remind me of the earlier clarity I had of what I was doing, why, where and when – which I spoke about in a different post. Thanks to this I’m actually continuing to work on my professional commitments even though I am doing this from home and have a lot more unstructured time.

It’s all about building up continuity through touchstone supports to keep me poised and ready to serve in the midst of this crisis. I have made all of my tutoring and editing services free, and am now offering them online, too – only to those who need and cannot afford. More about that here. And there is no greater purpose than to serve those in need. There are many people in need at this time. I try to remind myself that I don’t have it as bad as many others at this time.

Contribution: Is it Possible without Consistency?

I read something recently that said that to be a meaningful contributor you have to be consistent. This is certainly true to a point. But I think it is important to realize that if you try your best, and make it clear up front that you have a disability that keeps you from being consistent and that therefore you want to know how to be involved in a way that plays to that… I think that if you do that then it is possible to contribute without being consistent. Just don’t sign up for roles that require consistency.

Don’t forget: you are always a contribution, just by existing – you matter. God created us all equal and we are all fully human, no matter how broken we may feel.

Don’t forget: sharing your story, when it is safe to, and when it is not traumatic to do so, is a contribution that will allow for others to feel like they can share theirs. I have made myself ill with worry after sharing – so go easy on yourself. But once you think you have the right balance, share. It brings hope, and it heals.

Don’t forget: if you can’t share, you can be a listener and support others in prayer when you hear of their needs. You are a contributor and you matter, every time you pray for and think of others.